We want the family of a child born with a disability to have timely access to all necessary information and services so that they can enjoy regular family life as soon as possible.
“It was tough to come to terms with the fact that our baby was not the way we all wished her to be and to let our relatives know that Zuzka was born with Downs syndrome. In certain ways it was tougher for them than for us. We had to learn to live in the present, to be happy about the progress Zuzka was making and not to look into the future. It was very unpleasant and painful for me to hear others say “You will manage, you are strong”, “No one could cope with this, but you”. Our physicians were always willing to listen to us, and whenever possible, advise us how to go on. And it wasn’t always just about health-care. At every visit they let us know that whatever we were doing, we were doing well. And that it was worth it. The early intervention care midwife, was so important.”
We want to understand what families need, their concerns, and to give help where needed. We ask specialists helping families in this tough situation and we hear what should be changed, improved or supported. We want to know how families experience their situation, both those that already know how to cope and those who are just finding their feet.
We know from the experience of families with health-disadvantaged children that the crucial help and a turn toward a normal family life was for them the early care service which showed them, in the safety of their home, how to go about it. The pilot year was focused on enhancing the capacities of early care and on systemic changes related to it. No less important goal of the first call was the care for caregivers and spreading information on rare diseases. In total, we supported 23 projects.
“Exhaustion, feeling helpless or expending enormous energy to access information and services - in good time, where they live. The more a family tries to make sure their child is a loved and integral member of the family and community, the greater the obstacles they must overcome. In contrast, when they feel that they cannot cope and they want to place the child in institutional care or in a special school outside the home, it is easy. Institutional support is still simply more accessible in the CR than support in the family home. I am convinced it should be the other way round.”
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